Thank you so much for your quick response. Although it has taken me awhile to be able to respond, I was able to read it right away and it brought tears to my eyes (as many things seem to do these days.) I'm so sorry to hear about all of the hardships so many of you have been through.
I'm sorry I did try to read over the rules for newcomers but I have been scrolling and googling for the past few months and have come across a few different oral cancer support groups and may have gotten mixed up on some of the rules. I did try to do the signature thing tonight as well as I could. If it isnt right, I can change it or add more.
As I said before, the 2 months before the surgery were really rough and stressful and I've hardly been able to focus very well on anything. I have felt better since the surgery seems to have gone as well the doctors say could be expected and possibly(?) even better than I, personally, expected.
I believe I was getting ready to go back to the hospital that day I read your response and had plans to respond once I got there but as you see, that didnt go as planned...
So, I will update from where I left off and also try to add more information I may have left out before. So I posted on August 2nd. That would have been Friday. His surgery was Tuesday, I read your post Saturday, went back to the hospital that night, got a total of around 2 hours of sleep that night then we got to come home on Sunday at around noon. Well, I got to come home on Sunday. He got to leave the hospital, but his mom felt better to have him stay with her because I needed to get back to work and she wanted to be able to watch after him and especially to help him with his feeding tube. I, personally, also feel better about him staying with her through the week, especially while I'm working and also especially since i still havent been able to clean the house as well as I would like and I was hoping to set things up so he could be as comfortable as possible. But I had also hoped that he would come home on the weekends at least.
Since I'm back at work, I have a pretty long commute as it is, then I go across town to his mom's to check in on him and straight back home to get ready for bed and for work the next day so if anyone responds to my post, I may not be able to respond again until next weekend, unfortunately.
So, I do have a few questions for you all and I will try to get to it...
First of all, One reason I'm worried about getting the house cleaned is because the hole in his neck where the trach was is still not closed up and I know that needs to stay as clean as possible. I have a little dog that sheds and I need to vacuum and dust really well, which will require me, on my own, to move all of the furniture out, and I had wanted to also steam clean the carpets. The doctor, nurses, etc, didnt cover, or tell him to cover the hole that is left in his neck and I, personally, feel like it is looking worse now than before. Would it hurt to cover it?
We saw the doctor on Wednesday, 4 days ago, and I guess I should have asked him but it seemed to me that it was healing better before we saw him. I only noticed the next day that it looked worse, possibly bigger and, I thought it might have pus in it but apparently the home nurse visited yesterday and said that it was mucus.
His mucus problem also seems worse to me now. It seemed like it was getting a bit better before he left the hospital. They sent him home with a suction but it doesnt seem to work as well as the one he had at the hospital. Maybe we can order a better one? And they did give him some robitussin in the hospital but didnt tell us to continue using it. I have read a lot about people having trouble with mucus after this procedure but its all kind of in circles in my mind right now and I cant remember if they said that it gets better or if this is a life-long, constant issue. I really hope not.
He was a smoker for 30 years before his surgery. He didnt quit until the day of the surgery and he hasnt smoked since his surgery. I really hope he doesnt start back. I still havent quit. I have tried slowing down and have had some better days but the stress isn't helping the situation at all. That is another reason I'm not complaining, to him at least, about him being at his mom's. I certainly wouldnt want him to come home and resort to his/our old habits. I really hope that I can quit before he comes home, but that's all on me.
Another question: he only told a couple nights ago that his tongue feels swollen. I dont know if it actually is swollen or if it just feels that way to him because, it actually is a kind of a foreign object so of course it is going to feel different. We went to his follow-up with his doctor on Wednesday, and I asked the doctor all of the questions I could think of. I had taken notes but he hardly asked any questions and since he didnt mention how his tongue felt to me until afterwards, I didnt know to ask. I did ask the doc if he would need any speech therapy or a nutritionist and he said no. He said things are healing well and that he can begin talking now and that talking IS speech therapy. But I have read about tongue exercises, swallowing exercises, etc. and I'm sure it wouldnt hurt for him to try to different things if anyone has suggestions. ??
His jaw is still swollen so maybe his tongue is as well. He was taking ibuprofen before the surgery but had to switch to tylenol because ibuprofen thins the blood. I suppose he could start back on Ibuprofen now but not sure because it has that protective coating and we are having to crush his pills for his peg tube. I don't know if that would hurt his stomach?
Oh, another thing we found out from the doc on Wednesday, there was cancer in 4 of the nodes they removed. The original plan had been radiation 5 days a week after the surgery, now we're told he needs chemo. I've barely had any time to read much about chemo. Of course I know all of the things, i think most people know, like how weak it can make you, etc. but I dont know what to expect other than that. I was already so nervous about the radiation because I feel like, as soon as he begins to possibly have decent, not so bad days, again and his mouth possibly begins to feel better, they will come along with the radiation and ruin all of his progress.
As far as comfort, what do you guys think would be best for him? Should I set up a recliner? He is using one at his mom's now but he says it doesnt matter to him. And how should I set the bed up? Should i try to get a special type of pillow. It seems like I remember reading that it would be best if he sleeps on an incline.
Also, the long term problem that I asked about in the beginning, swallowing...
He has been able to drink some water since they allowed him to start trying but that is about it.
He tried a bite of jello yesterday and couldnt get it down, then tried a bite of applesauce today and couldnt do it either.
I hate this...
Luckily we havent had any setbacks but the progress has been really slow this week. I understand that it's going to take time and even can get much worse. I just want to do everything I can to make it as easy for him as possible. Thank you all in advance for any suggestions.
Also I realize this post was really long. I just wanted to add all of the info I can while I have time. I may start new threads about each individual problem if and when I get a chance.